Article by: Rebekah Bavry
Photo Credit: kitthuongphotogrpahy.com
I’m that mom. That mom you see in the store with her two kids acting crazy. The one you give the stink eye as my son runs into your path. The one lecturing loudly and sternly. The one you all write crap about on Facebook for not leaving my kids at home. I’m also the one who is just dying to get my hands on a t-shirt that says, “My kids are autistic and in a gifted class. What’s your excuse?”
My husband and I met on the Internet and started dating about 10 years ago. He found out he was getting deployed, so we got married six months after we starting dating. After five months training, one month break, and 12 months boots on the ground, he came home from Iraq. We decided to have a baby. We tried for one and got TWO. After carrying twins for 38 weeks and a quick and easy C-Section, we had two beautiful babies: a handsome little boy with brown hair and eyes, and a beautiful baby girl with red-hair and blue eyes. To this day they are still the most gorgeous children on the planet! I just knew that they would be special, that they were going to do something great with their lives! Don’t all parents? I thought “HOLY CRAP! These are mine?? Aren’t they a little big for twins (8.05lbs and 6.5lbs)? I get to take these things home? NOW WHAT???” After that first time, I was thinking, “Look what I made…I grew these inside me,” and “How did they fit??” I never had that crying moment. That “Oh I am the happiest person alive” moment. Nope, it never happened. I think it was because of the morphine. But I couldn’t wait to see what they would become…I just had to get through the beginning of their lives first!
By 13 months I noticed they were developing slower, especially verbally, than other children. Other children seemed to be further along. They didn’t meet the age standard for words that they should be able to speak. But, Birth to Three, a program in Texas, told me they weren’t worried. Our son had sensory issues and needed extra stimulation, like bouncing and rough housing. That’s all. And that he needed a little help talking. So we worked on that until we moved to Maryland, just before the twins turned three.
Right before the kids turned three years old, my husband came down on Recruiting Orders. When we arrived at our new assignment, the children, who had been potty trained previously, all the sudden regressed to needing diapers. Their speech was still pretty awful, even for a toddler. I compared them to other children all the time and I just knew something wasn’t right. I was worried. I was scared about Autism. I had heard how it was becoming more prevalent. It was actually my worst fear for my children. What if they had it? What if they had something else? What if they had intellectually debilitating issues??
We had them re-evaluated immediately. The re-evaluation process was long, difficult, and grueling for all parties involved. And afterwards, both my husband and I cried. My worst fears were about to become reality.
The Autism Specialist said that she was sure they (the twins) were autistic. And she even thought that they were probably moderate to severe (which is not good.) Once the team left, my husband and I clung to each other and our children and just cried. Our happy, little family was being torn upside down and inside out! I knew something was wrong, but I didn’t expect it. Not both of our twins. Especially our girl, who is more severe than her brother! It’s so much rarer for girls! We were just devastated. My husband doesn’t cry much, but he cried that day. It is heartbreaking finding out that you have children with developmental issues. The future is never certain with things like that.
We were referred to the Kennedy Krieger Institute: Center for Autism and Related Disorders at Johns Hopkins University in Baltimore. It took about eight months to get in. It was like being in limbo, or the Army. Just waiting and waiting. I would call to see if there were any cancellations. There were none. We could have been given an appointment somewhere else faster, but we decided that if we were going to do this, it was going to be at the best center on the east coast. Finally, we got our appointments. The daylong evaluation by the specialists at Kennedy Krieger Institute was grueling. The tests, the waiting, the nausea, the anxiety, the migraine that hit me on the two hour drive back home in rush hour traffic, the screaming three year old that didn’t understand. All I could think of was our beautiful daughter. Her beautiful hair and smile, the one that I had so many high hopes for in life, the one I was looking forward to bonding with and one day talking about boys with, one day watching her get married and have kids. Now she was diagnosed ‘autistic’. All my hopes and dreams for her had turned to despair and agony. Then, I had to repeat the process the next week with my son, who did a little better, but he got the same diagnosis.
My parents were in denial. In fact, my dad still sometimes says there isn’t anything wrong with my kids, and that they are just behind (he’s an Osteopathic Physician, so he has some credentials). I wasn’t in denial; I was crushed. I have special needs children. I felt like a failure. I felt like it was my fault! Everything I wanted for them, I didn’t think it would ever be possible now. In my eyes, they would never become doctors, lawyers, engineers, singers, dancers, artists, play organized sports, play a musical instrument…it was all gone. All my hopes and dreams for my children had flown the coop. AND I DID EVERYTHING RIGHT during my pregnancy. I carried two healthy babies to full term. I didn’t do drugs, I didn’t smoke, I didn’t drink, and yet, I was the one who carried defective children. I was in mourning. I hated seeing people with normal children. Especially when I knew they were smoking, drinking, and doing drugs while pregnant, and yet they had completely normal children. I hated them for it.
While we were waiting on Kennedy Krieger, the kids were enrolled in special education Pre-K so that they could start receiving some services. They weren’t good at being around other kids before Pre-K. They wouldn’t look at you when you talked to them, it was hard to get their attention, and they were really just in their own little worlds.
We began to see emerging strengths for each of them. Therapists and specialists call them “splinter skills”, or something that they are extremely good at or have a particular talent in. And they were (and still are) so different! Our son started to show a growing interest in numbers, while our daughter, who was originally very introverted began to come out of her shell. She began to really love stories. She even tells them to herself, using different voices for the different characters. They also both were finally re-potty-trained.
In Kindergarten, they were in separate regular classrooms. Our son was really gaining ground on his numbers. One day I sat down with him with a bag of pennies and started a little game. Pretty soon he knew his multiplication tables. We also found out that he could add and subtract in his head. I would print off 2nd and 3rd grade math worksheets for him to do just to keep him occupied. Our daughter began to draw, and not just pictures, but stories. She would draw the whole story out and put it in order. Sometimes it was one that we had read to her, and sometimes, they came straight from her own imagination, which was showing to be a vast pool of fantasy and fun.
When Kindergarten started, our daughter was getting great reports. They began to read, and read well they did! Their teachers were very impressed. But it wasn’t always lollipops and gumdrops! Our daughter’s teacher was a witch. She was older and thought that because her nephew was autistic she was an expert on my child. The teacher didn’t know what to do with our daughter. She wouldn’t come out of her imaginary world, just wandered around the classroom. The teacher wanted to know what I was going to do about getting our daughter to do better in school and when was I going to medicate her. I felt an overwhelming urge to hit that woman as hard as I could in the face. I mean, who did she think she was?? I didn’t punch her though, because I probably would not have stopped. I didn’t think my husband could handle two autistic children, recruiting, AND a wife in prison for assault. Multiple times I went to the principal and told them that I wanted her switched out of that class. I also called an emergency IEP meeting. (Individualized Education Plan, every student, gifted or special needs, has one. An IEP tells the education goals for the fiscal year. For example, Jane Doe will be able to write the alphabet legibly without help 80% of the time. That’s a sample goal. They are tailored to every individual child’s needs.)
Finally, a Special Education Teacher stepped in and got that all straightened out, although it was not without pain, tears, anger, and lots of frustration.
I want any of you who have children to think of something, think of the last victory your child had. Was the victory an ‘A’ on a spelling test? Was it cleaning his/her room without being helped? Was it getting a high score on that video game that they love to play? Did they make a friend at school? Did your daughter tell you that she loved you when you said it to her? Some might say, “Well, those aren’t victories. Those are normal things that kids just do eventually! How is that a victory?” Sadly with special needs children, these are HUGE victories.
I cried when our daughter told me she loved me for the first time without prompting. Our kids are really smart. My children aren’t “retarded” or mentally impaired, just Autistic. All these terms come with a stigma. Retarded implies the child will forever be impaired and need 24 hour care for life. Mentally Impaired has a very similar stigma. And unfortunately, sometimes Autism carries that same weight, but it doesn’t have to. I am here to tell that you don’t have to be afraid. You don’t have to fall apart. Yes, have your pity party in the beginning! Cry if you need to, I still do sometimes!!! But then dry your eyes and get ready for a long ride. It does get bumpy! And there will certainly be rain clouds, so bring that umbrella. But it doesn’t have to be full of despair.
Our now six year olds have communication issues. They learn differently, and they have extreme social difficulties. Our daughter is loud and my son likes to touch people. For example, an older veteran walking with a cane was coming out of the PX. My daughter says, “Why are you walking with that cane? Is it because you are old?” Or my son, being he likes to touch, might get in to someone’s personal space. Or my favorite, when we are in a grocery store and they have a breakdown, we get those “You’re the worst parents ever!” looks. (T-shirt time!)
When we moved to Fort Campbell, I was so scared. What about our kids’ school? Would they have the resources? Would the teachers be a good fit? I was so happy that we got the school they are in! The principal and guidance counselor hand-picked the twins’ teachers! And it has been a perfect fit. Our son was tested for gifted on the recommendation of his teacher and he got in, and our daughter got the aide (thanks to her teacher) that she desperately needed. Now they are thriving academically and making social progress.
I still feel like a failure, almost every day, in fact. But I am learning along with our kids. I am learning that it’s not my fault. (I have my theories as to what is causing autism, but that is such a long theory that it will have to wait!) Trust me, the problems don’t stop with education and socialization. Discipline is difficult. Sometimes the kids just don’t understand right from wrong. One thing that terrifies me to my core: they can’t understand that some people are just bad. My kids have never met a stranger. What if they meet the WRONG stranger? *shivers* What if someone hurts or takes advantage of my babies?? How do I teach them these skills that most kids get relatively easily? How do I teach them that people will hurt them because some people are just evil? Our son is so sensitive. He doesn’t understand why children are hurt by adults, why some go to bed hungry, why everyone isn’t as blessed as we are. How do I teach him, well both of them, that? Our daughter has very little compassion. She laughs when people get hurt. She thinks it’s funny. How do I teach her that it is not? There are just so many issues we face, and there are new ones every day!
But our children are lovely. They are sweet, loving, kind, and oh so smart. Trust me, Autism sucks. I won’t sugar coat it. But it makes all the smiles, the victories, the hugs, and the love even more amazing. It makes you appreciate some of the smaller things just a little more than the average parent. And it’s not the end of the world; it’s a whole new world with some amazing possibilities. I can’t wait to see what they become!
So, back to the store comment. Have some compassion. That mom with screaming kids may have just learned that her child has a disability or disorder, or is trying to cope with two autistic children whose father is deployed, while running a household, going to school, and trying to survive on a hope and a prayer.